A Tale of Two Rough Nights

Having one rough night is bad enough. Two in a row...! That's inexcusable! Last night I was wracked with a migraine and stomachache SO bad that I was brought to tears. Home alone, I was forced to call for reinforcements at 11pm. Luckily, my friend Michelle came and sat with me and helped me avoid another trip to the emergency room. 

She grabbed an ice pack and snuggled me into bed and put the pack behind my neck and that calmed the worst of it. I was finally able to doze off for the first time all weekend. She kept vigil by my bed most of the night, which was comforting, and made sure that I was alright. 

Tonight, I lie awake with a HORRID stomachache and throwing up everything...even water. I've taken a melt away zofran, used an ice pack (having that on my tummy did NOT feel good), had my back rubbed, and taken phenergan, all to, so far, no avail. 

Come morning, urgent care will have me reenacting the old Mervyns commercial "Open! Open! Open!" Hopefully they'll be able to provide me with some relief. I can only imagine how dehydrated I am. 

It's aweful being awake in such excruciating pain knowing that there's no real place for you to turn. I feel helpless, my parents feel at a loss, the ER tells me they're not the place to turn to, I feel like urgent care will most likely tell me the same thing--what, then, am I supposed to do?! Live with it? Suck it up like a champ? This isn't a bruise, splinter, twisted ankle, or run-of-the-mill stomach issue...this is serious here, people!!

Do doctors take a course in chronic illness? I mean, in how to deal with them at the bedside manner end of it? If they don't, I think they should. Many of them lack, SEVERELY, the proper bedside manner needed to deal with someone living with chronic illnesses. Pleas don't belittle us. That's the last things we need since, often times, coming in to the ER or urgent care was one of the hardest decisions we had to make that day anyhow. 

A Letter To My Loved Ones

Dear Loved Ones,                             May 23, 2015

Being Chronically Ill sucks! I'm sure watching me be Chronically Ill really sucks, too. There's not a day that goes by that I didn't wish that this disease would just disappear from my life—OUR lives, really; but, let's be honest, it's not looking too promising. So I guess that the best thing that we can do is buck up and do the best that we can under the circumstances. I try to look at it as a blessing of sorts—weird, I know—because I think that Gastroparesis has made me a stronger person. It's a bummer that something like this has had to come into my life to make that happen, but...

Se la vie!

I want everyone to know that I love and appreciate all of your prayers and support. I am thankful for your understanding during my difficult times and my good times, as well. Thank you for embarking with me down this adventure that is Diary of A Gastroparesis Warrior and the outlet that it has afforded me. Thank you for allowing me to educate you and whomever else out there in this great wide world about this little known disease. Thank you for just being understanding.

Please continue to be sympathetic toward days when I have to cancel plans, be a party pooper, or am a little melancholy. You know that is not my normal M.O, but just means that my normal gusto has just “gusted” out the window that day and I need a breather. Don't EVER feel bad for asking how I am, that's showing concern, but don't chuck me under the chin and tell me to “buck up” because I might buck you under the chin and chuck you out of the door! I don't expect you to understand what it is I'm experiencing, but you can ALWAYS ask me to describe it—or just admit you don't know and say you're thinking of me! Empathy and sympathy goes a long way!

At the end of the day, a simple text, a “hey, lets get coffee/catch a movie”, dropping a card in the mail does wonders for a person's mood. We all lead a busy lives, even those of us who are Chronically Fabulous—but a little thought counts!

Sincerely,

Christine

The Girl With Gastroparesis and the Emergency Room

Making the decision to go to the ER is a difficult one for someone with a chronic illness. You already know that there's not going to be much that the doctor's can do for you, but, at the same time, you want someone to help you. 

That was the case with me last night. 

But being in as much pain as I was in, I just couldn't bare it any more...so in I went. I had my blankie, my hoodie, everything I needed to be as comfortable as possible in that cold environment. 

When the doctor came in he said he had looked over my chart and said that my last gastric emptying study had been "iffy", whatever that means. Whenever the doctors bring up the study they each say something different. This time it was "iffy". I wish they would come to a consensus about it. The he asked me what was going on and for how long. When I explained I had been in indescribable pain for several days he said "the ER is not for chronic conditions it's for when your stomach is bursting open."

Thanks, Doc. 

He also said "I don't care if you're a cop, a doctor, a priest, or Mother Teresa, do you use marajuana, cocaine, or meth?"...uh, no. I've never been asked that before, so that was an odd and interesting interaction. 

He, like most others--until they meet me--have never heard of the GASTRIC pacemaker, so I schooled him on the Gastric Pacemaker and it's purpose. His ears perked up then and he became fairly interested in what was going on then

He did some tests...blood, an x-ray...gave me some medicine and when it all came back normal--as usual--he sent me on my way home.

Just once I would like for a doctor in the ER or urgent care to act like they give two rips about me even though I'm a chronically ill patient. We see SO many doctors and have SO many tests and SO many procedures, why on EARTH would we want to go to the emergency room unless we have to??! A little dignity and respect would be awesome to experience when going in rather than being lectured. 

Starbucks and the Girl with Gastroparesis

Hello, my name is Christine and I am a Starbucks addict. Every morning on my way to work, without fail, I drive up to or walk into Starbucks and order my venti Java Chip frappaccino with extra caramel and extra chocolate--because I don't actually like the taste of coffee. Sometimes I don't even have to open my mouth to order, the lovely Starbucks barista already knows what I want...is that not sad? Nay! I choose to think it's good customer service!

At work I often get asked why I drink those every day or how I stay skinny drinking a gigantic Starbucks every day and the answer is simple and complicated all wrapped up in one big word: Gastroparesis. 

I'm sure I could--and should--make healthier choices when it comes to my nutritional intake choices, but sometimes it's just SO hard! And Starbucks is SO easy!  Plus, it tastes really yummy! 

Here is my thought processes behind it--and it TOTALLY works for me (I know, it's just an excuse, but whatever): I need to get calories from somewhere and where else better to get it from than a venti Java Chip Frappaccino?! ::high five if you agree:: I have such a hard time getting food in...a hard time getting anything in...but the frappaccino seems to go down alright...most of the time. It's helped maintain my weight for the most part and keep me running. If it works, it works, right? 

That's the thing with Gastroparesis, if you find something that works, run with it! Starbucks seems to work for me. It doesn't ALWAYS stay down, but for the most part, it does. At the end of the day, I try the best I can to keep my weight stable and the Java Chip seems to work for me. 

So thank you Starbucks!

The Donut Mistake

Well, I did it, I ate a donut like any normal person would for Teacher's Appreciation Week/Day would...except, I'm not any normal person. I keep forgetting that. You would think that, after having Gastroparesis for five years and having countless tests and procedures, being poked and prodded countless number of times, diagnosed and misdiagnosed and diagnosed again, that I would remember "Hey, eating that chocolatey, doughy round thing is going to send you into a tailspin of despair for X amount of time." 

Nope! I ate that sucker anyway. And I ENJOYED it!

Since eating said donut I have been in a gastroparetic flare for a week. I have had such a difficult time consuming liquids, let alone food. My stomach has been painful to the touch, movement, and just sitting there. I have requested from family and friends alike for an -ectomy of my whole trunk, but they won't oblige--so rude. A pox be upon you donut world, this is your fault!!

...ok, maybe it's more MY fault for giving in to temptation, but I was frustrated that day and chocolatey goodness is my weakness...

Here's the thing with Gastroparesis:: there are varying degrees of it. There are certain things that I can eat that Sally can't. There are certain things that Sally can eat, that I can't. There are certain things that NEITHER of us can/should eat.  Therefore, Sally might be able to handle bread products; whereas (CLEARLY) I cannot. So, if you see me reaching for that chocolate donut again in a moment of weakness, slap me...HARD! 

I attempted onion rings today. That was a big mistake as well. Again, if you see me reaching for those friend rings of yumminess, slap my hand and scream "NO!" It'll only benefit me in the long run. Like the donut, the onion rings are not sitting well and I'm feeling quite sick. Maybe the disease is progressing more? Maybe I'm finding I have more intolerances? Maybe they've always been there and I've just turned a blind eye, who knows. Just remember to tell me "NO, Christine!" when you see me reaching for those kinds of things. 

Triggering foods stink! They make you feel miserable, they make your friends feel miserable for you, they make life in general miserable, so it's best to just avoid them. 

Goodbye, donuts. 

The Girl With Gastroparesis Got A New Puppy

A lot has gone on in my world recently. I am a new parent!! Wait! Put your eyes back in your head...haha...my baby has four legs, a tail, barks and fur! He's ADORABLE and I know you're jealous!! He's a 7 week old German Shepherd (all black) named Major Legend--but I just call him Legend. I brought him home on Sunday and my life has not been the same. 

Last year on February 1st I had to put my Germam Shepherd, Eden to sleep (she was 11 years old and had cancer). I was absolutely DEVISTATED and didn't think I would ever want another dog. I don't believe Legend is REPLACING Eden...it's more like changing of the guard. Eden was EXTREMELY special to me--she was a Per Therapy Dog--had a fantastic personality, chances bricks, always had to touch me, and was always smiling. With Legend, only time will tell, he's still just a little Peanut. 

Having Gastroparesis has slowed me down a bit, anyone who knew me prior to getting sick can tell you as much. I am hoping that by getting Legend I will have an increase in energy--or, at the very least, he'll be able to take my mind off of a flare-up. It been well documented over the years about the healing effects of pet ownership. Dogs, in particular, seem to have a special affinity for those with special needs and illnesses. There are dogs that alert peope to when they are going to have a seizure, others who seem to be able to sniff out various kinds of cancer, and still others that can detect diabetic complications. [http://well.blogs.nytimes.com/2008/01/08/the-healing-power-of-dogs/?_r=0] 

One recent steady discovered that by interacting with a pet increases a person's oxytocin level, the hormone that not only causes us to become more happy and trusting, but, in the long-run, prompts healing in the human body. [http://www.npr.org/blogs/health/2012/03/09/146583986/pet-therapy-how-animals-and-humans-heal-each-other] Who doesn't feel better after hugging a fluffy bunny or cute dog?! 

I can personally attest to visiting people in the hospital and seeing the faces of sick people light up as they would pet Eden and talk about pets they had at home or War Veterans talked about German Shephers they had just like her as partners. Petting a dog does AMAZING things for people. As a patient in a hospital myself who received a visit from a Pet Therapy Dog, it really does brighten your day and make you feel SO much better. 

While I don't intend to turn Legend into a Pet Therapy Dog for the masses like I did Eden, I will use him for myself. Maybe he will learn to detect migraines or Gastroparesis flares. He's SO smart already, so I wouldn't doubt it. Don't EVER turn down the opportunity to have a pet visit if you see one coming. They are VERY worth it!!

Age and Chronic Illness

Chronic illness hit me like a tons of bricks just as I was turning 30...literally. It was within days of my 30^th birthday that the migraines, vertigo, and the symptoms of

Gastroparesis hit. Most people that I speak to say “you're awfully young to be experiencing all of these health problems”. I would have to say that I wholeheartedly agree with them; however, I would agree with them whether I was 20 years old or 65 years old! There is no “perfect age” to be saddled with a chronic illness.

There is this thought amongst the majority of people—and that's conjecture on my part—that chronic illness, particularly serious ones, are things that are supposed to only happen to the elderly. It's almost like Chronic Illness is like getting your license, like a morbid milestone of life. It's one that I will GLADLY pass up. Senior citizens have lived long lives, they've experienced things; therefore, the natural progression is then to have illness to occur. It sounds horribly morbid, but, I think that's how most people think life is SUPPOSED to work, whether we say it out loud or not. Sadly, Chronic Illness has no prescribed age that it begins with.

It is estimated that 133 million Americans has a chronic illness, sixty percent of which are between the ages of 18 and 64. These are not including people with cancer, mental illness, or diabetes. My particular disease, Gastroparesis, has an average onset of 34 years of age—though it can occur at any age. I also suffer from chronic migraines. Migraines are usually experienced, originally, in adolescence first and then carried on into adult life; and women have a greater risk of experiencing migraines than men.

Chronic illness has no age discrimination...

Chronic illness will touch your life when it wants to. It pays no mind to your age, to your plans for your life, or how much you will it to go away; it just comes in like a thief and alters your thoughts about everything. It rearranges your thoughts about yourself (you're stronger than you realize, trust me), your thoughts about your friends, your thoughts about your future, the healthcare system, everything! There will be times when you become overwhelmed and want to give up, but you can't! There will be times when you become frustrated with your doctors and the healthcare system and want to throw in the towel, but you can't! There will be MANY times that you hear—well intentioned, but ignorant—statements from friends and family that make you want to scream, but you have to just soldier on.

Advocacy is key in the case of Invisible Chronic Illness(es). Help people understand what it's like living in your shoes...take away the mystic...the stigma...help give your illness a voice! The younger generation can use their tech savvy-ness to their advantage and spread awareness for the disease(s) that they have. Instead of being “whoa as me” turn it into “support me”! Turn peoples' pity into a sense of pride in all that you've accomplished despite not feeling well!